Thank you, Dr Nido Quebein, for telling me that. After the rough start I had last week, I was disheartened at the idea of starting over — from Square One — in finding a surgeon to do my oophorectomy. I needed a little attitude adjustment and Dr Q’s lovely quote provided just that.
Here’s the thing: my cancer “journey” has been long, complicated, circuitous, and seemingly endless. What is essentially a rather simple cancer that should have been easy to eliminate turned into a wild game of “how much can you take?” Just as I thought I was nearing the end of my “journey,” with what could be my last revision to reconstruction, the game became more intense and complicated and pretty much blew up in my face.
The next step of my “journey” should have been quite simple — have a routine procedure to remove my ovaries and eliminate the hormone production that fed my cancer. It’s outpatient surgery and rather easy compared to what I’ve endured thus far. But rather than being simple and working according to plan, it got hairy and I got overwhelmed. The idea of yet another doctor becoming involved filled me with dread, and it was like I was back at the beginning of this “journey,” newly diagnosed and jumping through hoops, frantically doing what’s needed to get to the next step.
Here’s where we are now: after standing on my head and reciting the alphabet backwards while juggling flaming batons, I was granted an audience with the lovely lady who schedules appointments for the next doctor in my ever-expanding roster. Oh happy day, after trying for 4 days to get through to this lovely lady, success was mine! I learned that this doctor only has office hours on Tuesdays and Thursdays because she’s in surgery every other day. Makes perfect sense, as she is a GYN oncology surgeon at the world’s #1 cancer hospital. What doesn’t make sense is why her staff doesn’t seem to be around on those other days. But apparently that’s not my concern and as long as I jump through the right hoops, maintain my headstand and keep those flaming batons twirling, I will eventually get what I need.
Silly, silly girl.
You’d think I would have learned at some point on this wretched “journey” that even when one does all the right things, and completes all the required steps, one still does not get what one needs.
When a human voice finally appears on the other end of the line, I think I’m going to actually schedule an appointment. I’ve cleared my schedule to accommodate hers. I am ready and willing to appear in her office at MD Anderson whenever she can see me. It’s the absolute last thing I want to do, mind you — see another doctor about another surgery. To add insult to injury, factor in the psychological warfare involved in knowing that this next doc works in the same facility–and in the same department–where my mom sought treatment for her cancer, and her “journey” didn’t exactly have a happy ending. Not even close.
Nope, scheduling an appointment isn’t that easy. First, there’s the prerequisite litany of questions: name, address, phone numbers, email address, birthdate, insurance carrier, group number, ID number, policy holder’s DOB and SSN. Then comes the question of what’s your diagnosis? When I replied, breast cancer, the lovely lady not so lovingly informed me that this office doesn’t deal with breasts. Duh. I patiently replied that I understand that and know that this office deals with the more southern ladyparts, but because of my breast cancer, I need to consult with this doc on an oophorectomy. Seems clear, right? Then the lovely lady wants to know why I want to have my ovaries removed.
Because I’m bored. Because it’s been too long between surgeries for me. Because I miss the prick of the IV desperately searching for a vein in my tapped-out venous system. Because I’m lonely for the company of people in scrubs & white coats. Because I’m hankering for the smell of Betadine and the commotion of the OR. Because I long for the feel of the plastic mask on my face as I lie completely naked under a bright light in a room full of strangers. Because I’m hoping to lose a few lbs before the holiday glut and think the all-day vomiting that inevitably comes to me after anesthesia is a good diet plan. Because I haven’t spent enough time recuperating from surgery while the world around me marches ever onward.
If there’s a contest for most horribly worded question, this lovely lady would win it, hands down.
Once again, I’m called upon to gather my composure and marshal my manners to answer. I resisted the mighty temptation to give her a smart-ass answer and calmly replied, because my oncologist recommends eliminating the source of the cancer-causing hormones. I wonder if the lovely lady could tell I was answering her through tightly-gritted teeth and with fists clenched as I battled the urge to make her ears bleed from a long, colorful line of cuss words. I wonder if I should have told her that when you’re diagnosed with cancer at age 40, with elementary-school-aged kids at home, and when your own sweet mama died an anything-but-peaceful death from cancer at the still-young age of 67, you’ll take whatever steps are necessary to increase your odds against this savage killer.
Lovely lady went on to inform me that I would need to provide documentation of my breast cancer being ER+ and PR+ (estrogen and progesterone positive), along with a host of other documentation. I would need to provide pathology reports from my breast biopsy in April of last year, when the idea of becoming a cancer patient was the last thing on my mind. And go ahead and throw in the pathology reports from my bilateral mastectomy and the paperwork on my last Pap smear, too. Wait–don’t forget to have Dr P, the OB-GYN who referred me to the GYN oncology surgeon, send his notes as well. After that, and after verifying my insurance, the GYN oncology surgeon will review my case and see if there is sufficient evidence to proceed. Lovely lady promised to call me back and let me know where I stand.
Ok, so more hoops to jump through, more due diligence on my part. Luckily I’m a rather fastidious cancer girl, and I have a very thick pink binder containing copies of everything the lovely lady requested except the Pap report and Dr P’s notes. Two phone calls and one online consent form later, that information is en route to LL.
Hurry up and wait.
After making the phone calls and gathering my records, I faxed 24 pages of the juiciest details of my breast cancer. All the nitty-gritty deets about tumor markers, mitotic index, prognostic markers, lymphovascular invasion scenario, anatomic pathology diagnosis, sentinel lymph node results, tumor size, and Elston-Ellis modified scores. It’s a fascinating read. And a wonderful trip down memory lane, just as I think I’m putting a little distance between myself and the cancer show.
I’ve done my part, now I wait.
Nobody said it would be easy…but I certainly didn’t expect it to be this hard. “It” is my least-favorite part of the cancer “journey,” which is the uncertainty and the waiting. The uncertainty and the waiting are far-reaching and apply to many aspects of the cancer “journey,” whether in awaiting pathology results, trying to schedule an appointment with the litany of doctors involved in one’s care, or marking time on the calendar between the latest procedure and getting back to “normal.”
The uncertainty and waiting applied this week to my attempts to move forward on the long-ago planned but not yet executed oophorectomy. When this whole mess began, and by mess I mean breast cancer so rudely interrupting my otherwise happy, healthy life, I knew that I would at some point need to have my ovaries removed. Those two oval-shaped organs have got to go because of the estrogen and progesterone they produce.
Monday I saw an OB-GYN, let’s call her Dr P, who is part of my OB-GYN practice but not my doctor. She delivered Macy because she was on call when my little girl made her appearance into the world. I chose to see her this week because her reputation as a surgeon is stellar and she is known for her patients not having complications, something that appealed mightily to me, the reigning Queen of Complications. I’m more than ready to take off that crown and pass it on to my successor.
Anyhoo, Monday’s visit with Dr P wasn’t terrible but it introduced a fly into the ointment when she enlightened me to the fact that a laparoscopic oophorectomy wasn’t an option for me because of the abdominal incision on my belly from The Big Dig. This was something I hadn’t even considered and is another example of how much of what one needs to know along this cancer “journey” must be learned the hard way. Hate that.
So I left Dr P’s office on Monday trying to wrap my head around scenario #1: the idea of open surgery, which is most unpleasant to me, and that she won’t be able to use the existing incision but will require another incision, below the 17-incher I’m already sporting. That incision is healing so nicely, and is so razor-thin and in the process of disappearing altogether. The idea of messing with it and disrupting its lovely healing is not my favorite.
In discussing the shifting scenario on Tuesday with the cabal of Amys, my two dear friends whose previous medical professions have made them trusted members of my decision-making team, it becomes clear that while Dr P is a great surgeon, she may not be the right one for me. I’m not ready to give up on the idea of doing this next surgery laparoscopically, which means I need to get a second opinion. As much as my petulant self did not want to set foot in one more doctor’s office, and as much as my weary self hated the idea of making yet another appointment, paying yet another hefty co-pay, and trotting out my sordid cancer history one more time, I knew it needed to be done. I got lucky and there was an opening to see the second Dr P on Thursday. Perfect.
I already had a doctor’s appointment for Thursday, with Dr N to investigate the idea of getting a little nip/tuck for my bladder. If we’re going with scenario #1 and doing open surgery for the oophorectomy, might as well take care of the bladder, which is showing signs of wear & tear that will only get worse with time and my balls-out style on the tennis court. I really like Dr N and went from dreading the idea of the nip/tuck to seeing how it can seriously improve one’s daily life. And I love that Dr N called me the “perfect candidate” for this simple procedure. Hooray! “Perfect” and “simple” are two terms that have not applied to any of my cancer “journey” thus far. After all this time and a case that’s been anything but textbook, I’m the perfect candidate. That was satisfying on many levels. Dr N works with both Dr P and the second Dr P, so it appeared to be a simple case of choose which OB-GYN to do the oophorectomy, and Dr N would coordinate. I’m lucky that Dr N works with both of the OB-GYNs I’m considering, because he doesn’t work with docs in the med center, so lucky me: I have my choice of OB-GYNS and the fantastic Dr N right in my backyard. I left Dr N’s office with something that’s been painfully absent in my cancer “journey” of late: hope. I was hopeful that this next round of surgery was going to come together, despite the shifting scenarios.
That hope was summarily dashed when the second Dr P has yet another differing opinion on how to do this surgery. What was I thinking, having hope and feeling good about the direction I was headed? What an utter fool I was for believing, however briefly, that the tide was turning and for once things were going to work according to plan. Granted, the plan has changed several times in the short span of a few days, and with each new doctor there comes a new scenario for which I have to wrap my head around, but I actually felt good after the visit to Dr N and went into the visit with the second Dr P thinking this would all come together.
I absolutely love, love, love the second Dr P. I loved him before officially meeting him when I overheard his phone conversation with a patient as I was escorted into an exam room. I have no idea what the reason was for the phone call, but he exuded care and concern with that patient via phone, and although I don’t know any details it was clear he was finding a solution. He is everything the first Dr P is not: warm, energetic, full of personality, an outside-of-the-box thinker who was genuinely interested in finding the best solution for me. He agreed with the first Dr P about my belly not having enough wiggle room to allow for laparoscopic surgery, and he introduced yet another troubling facet to this already-troublesome situation: if we do open surgery, whether using the existing incision or making another one, there’s precious little room to close that incision. The skin is just too tight–too tight to allow the area to be inflated for surgery, and too tight to close after surgery. He was also adamantly against open surgery because of the infection risk.
But the second Dr P isn’t giving up, and he hatches a new plan. Scenario #3: consult Dr K, a GYN oncology surgeon who does robotic oophorectomies.
I didn’t know such an option existed. Again, learning the hard way. And by the hard way, I mean the most exhausting and mentally taxing way. I told the second Dr P that as much as I appreciate his obvious care for the best possible outcome for me, I’m a bit on the Type A side. I’m a planner, I like things to go according to plan, I dislike change, and I do not shift gears well. In the span of 3 days, I’ve gone from laparoscopic; to a whole new incision; to using the same incision; to not favoring open surgery; to re-exploring laparoscopic; to nope, it won’t work logistically; to robotic surgery.
That wears me out.
I worked hard to wrap my head around the second Dr P’s plan. I really tried to embrace scenario #3, even though it meant adding another doctor to my roster. The second Dr P was sympathetic. He understands that I don’t want to get another doctor involved, and that I thought I had a plan and now everything is topsy-turvy. He reminded me that it’s worth it to see yet another doctor because he truly believes the robotic surgery will give me the best possible outcome, and with a shorter recovery time to boot. Sounds win-win, right?
Except that, just as I’m shifting gears clunkily and going along with this plan, another *&@%^ complication arises: Dr K, the doctor who would do this robotic surgery, is leaving the country — tomorrow — for 6 weeks.
Shoot me now.
That was it. I’d had it. I marshalled every ounce of self-control I had in order to avoid bursting into tears right there. And I am not a crier. Especially not in front of other people.
The second Dr P’s nurse, Maria, saw my distress and said, let me catch Dr P when he comes out of the exam room to see what else we can do. Thank you, Maria.
So she caught the second Dr P and told him that Dr K was unavailable for 6 weeks and that if this already-mentally-unstable patient has to wait that long to even see if scenario #3 will pan out, she may go bat-shit crazy and take us all out in a to-the-brink umbrage from which there will be no survivors.
The second Dr P called Amy and me over to the nurse’s station and hatched an alternate plan: use another GYN oncology surgeon who does robotic procedures. Thank goodness I live in a city that is ripe with specialty surgeons. But alas, both Dr K and Dr B, the second GYN oncology surgeon, work in the med center, which screws up my plan to incorporate Dr N into the surgery. Great googlie-mooglie, the idea of finding another urologist to do the bladder surgery –when I felt so good about Dr N doing it–was altogether too much to think about. I’m really on the brink now.
Sweet Maria offers to call the second GYN oncology surgeon’s office and make the appointment for me. At this point, she could have strapped me into a lunar module and sent me on a one-way trip to Mars. My brain was beyond fried so I blithely nodded my assent.
Would you believe that surgeon’s office was already closed for the day? And is closed on Fridays, so I have to wait until Monday to even see whether I can get an appointment. Cue the to-the-brink umbrage. And the beer for dinner. Five doctors in this week–and more to come–and I’m no closer to having an answer.
This brings us back full circle, to my least-favorite part of the cancer “journey,” which is the uncertainty and the waiting. I’m uncertain about which scenario will play out, and I’m waiting to get an appointment with yet another doctor, who I fully expect will come up with yet another scenario. Here’s one thing I am certain of, and there will be no waiting on this fact: I’ll be having beer for dinner again tonight.
Lyle Lovett said it best:
I understand too little too late
I realize there are things you say and do
You can never take back
But what would you be if you didn’t even try
You have to try
So after a lot of thought
I’d like to reconsider
If it’s not too late
Make it a cheeseburger.”
I don’t eat cheeseburgers, or any burgers, but I love Lyle Lovett, and his clever and playful lyrics have been running through my head all day as I contemplated my latest visit to my cutie-pie oncologist. Last time I saw him, we discussed whether I need yet another surgery, to remove my ovaries. See, those little suckers pump out estrogen, and estrogen happens to be fuel for the type I cancer I had. So the theory is this: cut off the fuel, starve the cancer and ensure it has nothing with which to reconvene. Since I wasn’t physically well enough to undergo the oophorectomy because of the post-mastectomy infection, we put that surgery on hold, but in the meantime I began getting a shot of Lupron once every 3 months. Lupron essentially does the same thing as removing the ovaries, which is to shut off the supply of estrogen.
I thought the plan was set: continue the Lupron shots until I was deemed well enough to undergo the oophorectomy, which would likely be in the fall of this year. Get the kids back to school, recover from the August 17th reconstruction revision, and get rid of the ovaries. I like having a plan. I like sticking with a plan. I’m not a fan of changing the plan.
Today, Dr Cutie Pie said he didn’t think I needed to keep getting the Lupron. I’ve been getting the injections for nearly a year now, so even though I was scheduled to get one today and was planning on getting one today, he thought I was done. The plan had changed.
Granted, I had complained to him about the major side-effects of Lupron: hot flashes and sweating like a pig in heat. It’s summertime in Houston. Not just regular old hot-as-Hell summertime in Houston, either, but record heat and record drought summertime. I can tell you with 100 percent certainty that hot flashes and Houston summertime are a wretched combination.
Do I think the hot flashes and sweating like a pig in heat are sound enough reasons to discontinue the current path of hormonal suppression? No. I haven’t murdered anyone (yet). Dr CP said there’s really not that much difference between hormonal suppression from Tamoxifen alone and suppression supplemented even further with Lupron. A year of Lupron injections seemed to be enough, in his opinion. The daily Tamoxifen will go on, though.
Disclaimer: I did not beg, whine, or persuade him to make that decision. Not like I did last summer with Dr S when trying to sway him to release me from yet another hospitalization or disconnect me from the dreaded wound vacuum, Sucky. I did not employ any such tactic with Dr CP today. He came up with the idea to cease & desist all on his own.
He also said maybe that oophorectomy isn’t necessary, either. While I’m completely in favor of eschewing yet another surgery, my gut instinct tells me to rip those ovaries out (gently, though, and with lots & lots of morphine).
Life is so uncertain. What’s the right choice? How does one make such a decision? Stop the Lupron or not? Pursue the oophorectomy or count my blessings that I won’t need another surgery? Where’s the Great and Powerful Oz to tell me what to do?
That’s the problem with cancer. One of the many problems. Big-ass decisions need to be made; life-and-death decisions. And while there’s research aplenty and resources available, there’s no clear answer. I like clear answers. And unchanged plans. Neither of which prevails in one’s “cancer journey.”
Nonetheless, we moseyed along through the rest of the check-up with the usual and quite popular assertions from Dr CP that my cancer is not coming back. I like that part. He says this at every visit, and I really like hearing it. He told me that my reconstructed chest looks fantastic, and I really like hearing that (even though I think he’s shining me on, because there is definitely some tweaking and fine-tuning that needs to be done). I still like that he says it, though, even if he’s shining me on.
We chitty-chatted about his new baby, my tennis game, and other pleasantries. He said he’s started playing tennis and is thinking about taking some lessons. When he told me he plays once a week, I told him he’ll never get better that way; it’s not often enough. He got all puffed up and said it’s enough for him because there’s such a thing as talent.
In the immortal words of Steve Martin, “Well, excuuuuuuuuuuuuse me!”
He even strutted down the hallway a bit, then turned to say something about how he’ll be ready in about 6 months to kick my butt on the tennis court. I said, maybe in about 60 years.
How on Earth do I manage to find such cocky doctors?????
We parted ways, him to daydream about beating me in tennis while I headed to the infusion room to get my port flushed. For the last time. Ever.
Yipee! That makes me very, very happy. I’ll get my port removed next month, when Dr S does my reconstruction revision. Can’t wait to bid adieu to that little guy (the port, not Dr S).
But while in the infusion room, I started to second-guess the decision to stop taking the Lupron shots. It didn’t feel right to me. The instant-gratification-girl inside me said, “Hell, yes, let’s forego the shot — that sucker hurts and leaves me bruised for weeks.” But the more-measured-approach-taking girl inside me said something doesn’t seem right with this decision. What’s the harm in continuing the Lupron therapy (besides the obvious, 20-gauge needle harm, that is, and the hot flashes and sweating like a pig in heat harm)?
Dr CP walked by a few minutes later, as I was discussing the pro’s and con’s with my patient advocate extraordinaire, Amy Hoover, and we grabbed him to say I’m not sure about the Lupron decision. He listened intently as we reviewed the pro’s and con’s and said there’s no harm in getting the shot. So I got the shot. Still not sure if it’s the right choice. No idea if it’s the right decision. My gut says yes, and my gut usually is right. However, the fact that it took 3–count ’em–3 tries to get the shot makes me wonder. The needle went in, but the Lupron wouldn’t go. Ow! 3 needle sticks with a 20-gauge needle could easily make a girl question her decision to question her decision. But, as Lyle Lovett says, “Life is so uncertain.”